Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

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Glioblastoma

My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.

FormerMember over 16 years ago

Hi folks,

Carrie and Emma - as Joan says, your posts are always moving and mean so so much to us on a different part of this journey - lovely to hear from you both and thinking of you as always - hope your taking care of yourselves ladies. xxx

Gayle - hope your not too tired today - sounds like you and Martin had a nice wee time to yourselves last night - insomnia is hellish isnt it - I've been taking the nytol one-a night tabs lately...my mum only took one, never took another as she felt extremely groggy the next day...i seem to be fine! Thanks for letting us know about Dot and Roger...sounds like theyre doing well and lovely to know theyre proud grandparents. Good that Martin and Martine have recovered....ive now got Amber covered in spots (viral apparantly) and Joe is now unwell...think its teething too but no teeth have appeared and he's still a wee gummy bear!

Eileen - my dad too is under Dr Sharon People's - what a small world eh - did I read you were from Blackburn - where is that, is it Livingston way? My geography outside Edinburgh isnt too hot as you can probably tell - Im from Leith if you've ever heard of that (yes, one of those dodgy Leithers)! Hope Rob is ok today.x

Sally - thanks for the informative post re the hospital bed....they always sounded so scary to be before but they dont sound as bad as I had feared - were not at that stage yet but very handy to know for the future if ever needed. x

ps - was the pm for me?? i never got one if it was!

Diane - Hope your ok today? Mixed feelings about work actually - Im not sure how the child care will all pan out either but I'll deal with whatever when it happens...no point in worrying about too far ahead. Also, what do people wear to work nowadays - ive forgotton how to dress apart from leggings and ugg boots - also would have to brush my hair - oh dear. x

My dad's OT stuff has just been delivered - hand rails for bathroom, zimmer etc - just waiting on him coming home in a few hours - going to be a bit chaotic with the 4 of us still staying here but we'll cope...somehow - my dad doesnt have the same patience at all for the kids at all as he used to have.

Becca - not long till your dad's 60th - hope you've had the empty fairly liquid bottles and egg boxes out this week and arent making toooo much of a mess! speak soon x

Lorraine - hope your enjoying your break from work love - spending lots of quality time with mum no doubt. lotsa love x

Well this was only meant to be a quick post but as usual........
love to all xxx

Love to Joan, Debbie, Sue, Julie, Rona and everyone else...

FormerMember over 16 years ago

erm Sally - sorry, i know you didnt send me a pm - that question was for Gayle - oops! maybe the nytols are affecting me more than i thought ! xxx

FormerMember over 16 years ago

Hi folks

Not like me to get a thru the day post is it, as normally I am at work! but today I am 'Mum Sitting', well she is sleeping actually and Dad has nipped away to Focus to get his grow bags for his tomatoes, I sent him away out for an hour as the poor man has a worse life than prisoners these days as he does not get out the house at all, Mum very weak today, I am actually going out with my friend tonite, I see her every Thursday so my hubby as cancelled his bowls so he can help Dad with the lifting etc, Scott is very good that way and it helps me so much to cope better.

Emma and Carrie, your 2 amazing gals, and I have been thinking about you loads and like Gayle said its hard to get you both from our minds, take care and remember we are all here anytime you want to chat.

Gayle - Lovely being in touch with you, hope things with you all are ok today and you get an ok sleep tonight, I have never slept a full nite since Mum was diagnosed be 2 years next month scary eh, it was actually my 31st birthday that she was taken to the hospital 12 May 2007, and had op by the 30th May horrible horrible time and my birthdays just don't feel right again now, I knew she was not right cause instead of siging love Mum and Dad she wrote love Margaret and George we had been in Tenerife for a week 2 weeks before then and I knew then as she just was starting to change so much, so my friend my birthday does not hold nice memories now but I am off work again this year when it is 12 May so hopefully I will be able to spend time with my Mum and then maybe go out for a meal with Scott at nite.

Lesley - Lovely to hear from you, hope your Dad is home by the time you read this, thinking of you loads as its so hard my friend eh, when do you go back to work? I am off until Tuesday then finish on 1st May - 13th for a break, as I was saying to Gayle its my birthday on 12th and that was when Mum first took ill 2 years ago so my birthday always tinged with sadness now shame eh was gonna get married that day too back in 2001 glad now I changed it 28 July was nae daft that way I get 2 pressies from him and not just a combined he he, hope Amber and Joe get better soon, lovely names you have for your kids Lesley and they are lovely as I seen their photos on facebook I will have to post more photos when I get a min on facebook, love to you all over in Edinburgh.

Becca - How has your Dad been this week, thinking of you lots signed up for the race for life last nite its the 21st June at Beveridge Park, Kirkcaldy? hope the sun shines for us when we do the race one year I done it, it was pouring of rain all day, anytime you want to chat you know where I am.

Well folks thats Dad back now its like the shift patterns in here now its my turn to go home and see to the dinner for tonite and tidy up a bit, Scott off with me tomorrow and Monday so looking forward to us both not having work and just spending time with Mum and maybe getting a little time together.

To everyone else I send a big hug, take care until the next time.

Lorraine xx

FormerMember over 16 years ago

Evening all

I am soo tired tonight, its the last couple of nights really catching up now, I even fell asleep there and missed eastenders awwwww.

Emma and Carrie (((((((((bighugs))))))) to both you lovely ladies, sending you lots of love. xxx

Lesley, great to hear that your dad is getting home soon, we have some of the OT equipment as well, its so sad when it first gets delivered, it just makes it even more real. Poor Amber and Joe hope they feel better soon, its horrible when the kids are ill eh? Your comment about leggings and ugg boots made me laugh, I am the same, I forget how real people dress again, I live in jogging suits and pjs most of the time, lucky if I spend time on my hair once a week and make up, what is that?? xxx ps I have sent the message again.

Lorraine, it was nice to be in touch last night, It has been so nice to be in touch with such lovely people its just a pity it could not have been in better circumstances. Hope you have a lovely night with your friend tonight.......you deserve it hun, Scott is an angel, eh. Hope you have a lovely birthday with your mum dad and Scott, milestones have such meaning now eh, you take care speak to you soon.

Love to everyone else off to get the pjs on have promised myself 10pm bed tonight, with a little help from nitrazepam.

love Gayle. xxx

FormerMember over 16 years ago

Hi everyone

Just another quick one, I've still to catch up with you all.

Emma - Hope things are ok with you. Our funeral's the day before yours at 1.45 pm. I've carefully chosen the music for it. I'm not sure what some people with think of a couple of the pieces, but i think i can safely say they sum B up. We had talked of what we would like for a funeral on occasions in the past. But I couldn't talk to him about it recently because as far as he was concerned he was going to get better, and I wasn't going to take that away from him. 400 people, that's amazing. I don't think we know that many people.

Gayle - I can identify with your comments about not doing your hair etc. I'm off to get my hair done at the weekend, the grey roots are really showing! And I'm going to buy some waterproof mascara. I haven't worn makeup for ages and I'm determined to do so on the day.

All the equipment went today. It was supposed to be collected yesterday, but they couldn't do it because of the volume of work. Trouble is it means I haven't got an excuse not to vacuum and dust anymore.

I'm meeting with the minister who will be conducting the service tomorrow. I saw him take one when a relative of mine died last year and liked what he did. B wasn't at all religious, and I think he would like his style. As I remember then he wore a flourescent green top.

Sendng you all a big hug.

Carrie x

FormerMember over 16 years ago

Good evening to all,

Just spoke with Emma, she is such a wonderful lady, she says she is very numb at the moment and it hasnt sunk in properly yet, which is just so understandable. She says she cant post much at the moment, she just isnt up to it.

Emma sending you love and lots of hugs as always xxxxxxxxxx

Carrie sending you hugs and love & still thinking of you xxxxxxxx

Love to everyone else as always xxxxxxxxxxx

FormerMember over 16 years ago

Good morning ladies. It's a bit miserable and drizzly here and the forecast sound a bit grim so my plans to try and have a day out at the seaside somwehere this weekend aren't looking too promising.

Carrie, your post about arranging B's funeral is so touching. You and Emma are both so courageous and inspiring to the rest of us.

LORS, I know what you mean about birthdays losing their magic. It was on my birthday last year at the end of May that Paul started his 6 weeks of RT/chemo and I just didn't have any interest in celebrating! I went out with both of my daughter last night and at one point they asked me what I'd like to do for my birthday next month and I just told them that I don't feel able to plan anything that far in advance at the moment. I think they understand.

I hope everyone has as good a weekend as possible. I'm looking forward to 4 days off work!

xxx

FormerMember over 16 years ago

Morning everyone

Feeling so much better today, went to bed at 10 last night, couldnt sleep as usual, went back just after 11 and slept right through till 9.45 this morning, I could not believe it I feel so refreshed, M and M still tucked up in bed.

Carrie, your post brought tears to my eyes, your are doing so well, B will be so proud of you. xxxx

Emma, hun (((((bigs))))) to you and the girls. xxx

Sue, we have lovey weather today after yesterday not being so nice, I had not realalised that you were still working, I take my hat off to you, enjoy your few days holiday with your lovely man. xxx

Lesley, Joan, Lorraine, Diane, CH, Julie, Becca, Debbie, Rona, Christie, Suzanne, Lisa, Jay, Izzy, reland, Eileen sorry if I have forgotten anyone, hope you have as good a day as possible.

love Gayle xxx

FormerMember over 16 years ago

Morning everyone,

haven't been on for a couple of days as Rob not too well, couldn't get him out of bed at all yesterday and he's very shaky, having problems holding things. Hopefully the sun will come out again and cheer him up a bit. The conservatory has been put back till the 20th April so not too happy about that as he is desperate to sit in it and pretend he is in his garden?

Lesley sorry to hear the wee ones are poorly, hope they get well soon, having their Grandad home should cheer them up. My Mum's a Leither too, born and bred, then moved to Lochend when she was about 6yrs old as the family had outgrown the flat they had. I originally come from Oxgangs in Edinburgh only moved out this way (Livingston) 12yrs ago. Hope all goes well with your Dad's homecoming. Take care xx

Emma & Carrie love to you both, will be thinking of you over the next few days and definately on Thursday and Friday. Stay strong.xxxx

Julie you ok, not seen you posting for a few days? xx

Gayle, Rona, Susan, Diane and everyone else thinking of you all, have a good weekend.xx

Eileen xx

FormerMember over 16 years ago

Dear everyone, especially those who have lost a loved one
I hope you don't mind me intruding on your thread, but I have been following your inspirational posts over the last couple of months since my husband stared the long journey of cancer treatment and all that goes with it.
Words cannot adequately express the emotions that I feel when I read your stories; the bravery and selflessness that you show is humbling. I get so cross when I listen to the word 'tragedy' in such circumstances as football match commentaries (even though I'm a fan!') - let the commentators read this site and see what true tragedy is.
May I share this gaelic blessing with you? It was read at my dad's funeral; he died 6 yeas ago of a sudden heart attack, and I have found the words very comforting.

Deep peace of the running wave to you.
Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the infinite peace to you.

With love to you all
Sue x

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